Taking my life back from pain, finding support

painACTION asked Max to write his biography and personal story as an example of how finding social support can help. Max lives near Detroit and runs an American Chronic Pain Association support group.

I am a 53-year-old man, now divorced after 30 years, a statistic too common with chronic pain.  I have two daughters, and a beautiful baby granddaughter. As a young adult I was diagnosed with pervasive osteoarthritis and at age 44, the pain and limp took me to the operating room for a total hip replacement. Not until my surgeon said “I didn’t do anything wrong” did the lack of feeling in my right leg begin to concern me.

With my family crying, I became the cheerleader and jumped into a state of denial. The pain was incredible.  After a long time, I found a new orthopedic surgeon and a pain specialist. I had a spinal column dorsal neurostimulator implanted that helped tremendously. This was also the first time I heard that I had something called RSD – Reflexive Sympathetic Dystrophy, now named CRPS – Complex Regional Pain Syndrome.

Now, I am on a regimen of various medications. I will never be without pain, but with help and a better attitude, I can make it through each day. I have moved on and look to only be positive; making any kind of helpful impact others will allow me. With healthcare now taking nearly 50% of my income, I have a great deal of empathy for those struggling not only with pain, but also those other problems that follow. Working with the ACPA helps me to help others and I consider it a great honor.

Meeting pain and isolation

Looking back, I now know that denial was my biggest personal problem with pain. I believed my surgeon who said I would improve and chose to disregard all the neurologists that kept using the term “permanent”. I hated that word.

You see, my sciatic nerve was damaged during a total hip replacement in July of 2002. That caused severe uncontrollable pain for what seemed an eternity. I made some poor choices regarding who I trusted with my health care and remained in denial for much too long. Also being told my case was so unique and without comparison made me feel very isolated. I lost hope and for the first time in my life was no longer blindly optimistic.

Once I could no longer deny my situation, I did become my own health advocate and found an excellent pain management physician. I also was able to contact a great reconstruction specialist who replaced every failed component that had just been installed during the initial hip replacement.

Learning that doctors are people like you and me with many levels of competency was a bit shocking. Yet, there are great physicians and therapists out there, they just tend to be difficult to find.

Searching for support

Along with chronic pain many personal side effects may take hold. Isolation, withdrawal, inactivity, cynicism, loss of hope and interest, financial ruin, depression and for far too many, suicidal thoughts. When I took inventory finally and saw too many of these thing in me, I knew I had to take charge. No doctor was going to help me through my personal problems and waiting for them to go away hadn’t worked well.

So, the light bulb went off and I began my search to return some of that optimism. This process was not overnight.  For me, it took six years.  For others it may be a matter of months or never happen at all. A very sad thought when you believe chronic pain rules your life.

For me, this change meant I had to reinvent myself from a very physical person – now gone – to someone who would have to use his compassion and intellect to make a contribution to the world. My ability to get around, walk, sit for very long and need to rest often made for some limited choices.

I selected Hospice volunteering first because I could do that for short periods and there was no physical component. Also, I knew I couldn’t fail. The need was great and no expectation was made to “fix” the person in palliative care. That got me involved and some of my self confidence began to return.

Next I decided to find a psychologist to help me through my anger towards the pain and depression. That proved to be a difficult task as everyone I interviewed said they were capable regarding chronic pain, but that was just untrue.  I persisted and found a wonderfully capable doctor, who led me to others that I can now refer.

The last thing I needed was personal support. There had to be a chronic pain support group in my area with so many people in need, so I figured this would be the easiest part of my plan. I researched for a while and decided that I liked the American Chronic Pain Association’s philosophy the most and the staff at their headquarters was very helpful and knowledgeable. There were chapters in the area so this seemed perfect. Well, those chapters near me were in a state of flux as one could understand because in order to facilitate a group one had to also have chronic pain. Everyone involved in the ACPA has chronic pain, which make the organization unique in ability and empathy.

Beginning an ACPA chapter

I began speaking with the ACPA Regional Director. Before I knew it, I agreed to begin a chapter myself. With her help, I was given more than enough support materials and plenty of advice regarding how to get the chapter started.  Finding a good place to hold meeting took quite a bit of time. I was lucky to find a local church that generously offered their office for use.

Announcements in local papers gave me the most phone calls and members. So after about four months of advertising, we had our very first meeting. Since then our group has grown considerably and I receive thanks every meeting for giving our group a safe environment where no one needs to explain or feels uncomfortable about their chronic pain. I tell them there is no need for thanks as I get more out of the meetings than I give, it is part of my own therapy. For some, the ACPA is their only lifeline that must be treated with respect and dignity.

The number of disorders and reasons all of these folks have are numerous, but we all share one very great bond.  During the meeting we work on various coping mechanisms that Penney Cowan and the ACPA provide. These are extremely helpful for those feeling alone and lost, controlled by the pain. We strive to transition all of us from patient to person at everyone’s own pace.

painACTION editorial note: There are national organizations that provide support for people living with chronic pain, through their websites, telephone links, and groups that meet in many communities. Check out The American Chronic Pain Association (www.theacpa.org) and the U.S.Pain Foundation (www.uspainfoundation.org).

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